Sunday, March 7, 2010

Again........!!!!!!! then the good news.

Hallo everybody, it's me again. I only talk to you every now and then but to me it is better to write one long letter than write everyday a little.

The last time I talked to you I was very down and did not know what is happening at Steve Beko hosp. Well I have news. But this news do not come without a story, again.......!

I was called by Sr Patricia from the kidney unit at Steve Beko hosp informing me that I need to come in again, for admittion. The dr's want to see me and finish the last test. I was admitted to the kidney unit on 23 Nov 2009 to finish up my last outstanding tests. Or so I thought. It will only be about a week then I am out of there with my report for 1 Mil hosp.

On Monday 23 Nov 2009 I went to the hosp with my car (Petro or Gerhard would collect my car during the day)I was in the ward at 6:30 to get the necessary papers to be admitted at admissions. I went through admission very quicly, not the usual long queue.
In the ward they started me on my first 24 hours urine collection (the previous course of collection was to long ago and they need to do it again) so for the next 3 days that is what I did in the hosp. Doing my business in a bottle.
After the three days I was just there waiting for the results. On the Friday I went on weekend pass and had to be back the next week. The Sunday I went in again for the next week. By now I was not happy because it is now for the second week and the first week I only did the bottle thingy. The next week they did sonars (which they already did previously) but there were new dr's and they want to see a new sonar. So I went for the sonar.
During this week I started with a sharp pain in my right side. The dr's said that I am bleeding into one of my cycts and that is what cause the pain.
The Friday I went on weekend pass again. Sunday I was back again for the third week, "to do the rest of the outstanding tests" On Wednesday I went for the test to see if there is any problems with my bladder (if I go for a transplant that my bladder would not be a problem) there were no problem. The dr's send me for another sonar to make sure that the bleeding into my cycts are not bad, I still had the pain in my side. No problems. On Friday 11 Dec 2009 I was discharged, all my tests done. I had to come back for the Professor's panel on Friday 15 Jan 2010.

On Friday 15 Jan 2010 I went to see Prof Potgieter with his panel. HE HAD GOOD NEWS FOR ME. According to all the test I don't need a transplant or dialysis at the moment. The Prof said that I can still go on with my kidneys as they are at the moment, I just need to stick to my diet, drink a lot of water and no bundgie jumping, then I will be fine.
Is'nt that good news, I was estatic, over the moon. The sr said I must just wait for the report and then I can go.
After a good hour or two I told the sr I would be back for the report in next week. I had to go to Gerna and her family in Potchefstroom for the weekend, we had something to celebrate.
The next week Tuesday when I phoned the report was not ready and I had to wait, they will phone me as soon if it is ready. After two weeks I did not phone again and decided that I am now tired of waiting and phoning to them. The calls came three weeks after my panel discussion. I went to fetch the report. And you won't belief. It is a small piece of paper (not even A4) saying the following to my dr at 1 Mil Hosp.
"Pt with Stage 3CKD. adult polycystic kidney disease.
this confirms that the above mentioned was worked up at our renal unit. she has stage 3 CKD, her urinating cysogram and cystoscopy + pylogram were normal. She has been advised to remain on her chronic meds and also to drink a lot of water for her polycystic kidney disease. She is not for dialysis at present".
That is it after a year being in and out of the hosp, disrupting life and those around me (I had to ask somebody everytime to take me to hosp and collect either my car or myself again)and that is all they have to say. What kind of report is that. "drink a lot of water!!!!!!" O sorry they indicated that I am stage 3, whow what an achievement that is what they found all this time????!!!!!.......
I am not happy.
On 15 Apr 2010 I must see dr Ledwaba at 1 Mil hosp again, to take her the small piece of paper. it is laughable isn't is.
Thats enough about me, I am ok and going strong. God is so good to put my kidneys "on hold" for a while so that I can takle other issues that need my attention now, more important stuff than me. All this time everybody was fussing over me and now there are other more important stuff to do.
Love you sis.

Friday, November 27, 2009

Update for past 7 months

So much happened the past 7 months. I was first admitted to Steve Beko Academic Hosp (SBAH) in March 09, after that I was there 3 more times for "work-up".

The beginning of May 09 I was admitted for two test, one of them going to theatre for a test. The other is a test with catheters etc. I was admitted on the Monday for the catheter test and when I was already on the bed and preped for the test the dr said he is not going to do the test now it is too late and he is not doing it. That was only 14:00. Needless to say that I was furious so furious that I started to cry and then I get more upset because I don't like to cry infront of people and therefor cried more ....... and ... repeating the circle. I eventually calm down and prepared myself for theatre the next day, going nil per mouth from 22:00 because I am going in at about 09:00. 10:00 came 12:00 came and at 14:00 the dr came to me to tell me that the theatre is full and they will not be able to take me, my theatre must be rescheduled. That was it I had a trully tantrum and did not want to talk to anybody. At that stage a Social Worker came to me telling me that I must calm down. I must "correct my relationship with my God" then I will be able to handle issues like this better. Have you ever seen petrol into fire? I went of like a cheap cracker and told her not to talk to me, I do not want to talk to her, my "relationship with my God" is exellent and there is nothing wrong. She do not know me so don't speak to me. She left and I went home.

Beginning of June 09 I was admitted again to SBAH, ward 4.6, Nephrology for the theatre test that was cancelled in May 09. I went to theatre and after that went home. And that was the last that I heard from the ward.

I followed up with the ward sister on my report that the dr must compile that must go to 1 Mil Hosp (dr Ledwaba). Twice a week I phoned just to get the same answer "The file is on the counter and the dr did not get to sit and get all the tests from the system and to compile a report for 1 Mil Hosp.

In October 2009 myself and 3 friends went on a 4 week holiday to Mosambique swimming with the dolphines and just doing everything and anything we want to do. On my return I phoned the ward again and again got the same answer. It has been nearly 6 months that I last saw any dr and I was beginning to panic, so I phoned dr Ledwaba at 1 Mil Hosp. She was under the impression that I was still under the treatment of SBAH so she requested all the bloods and urine necessary and I went to see her. (Hey do I miss my sister here in Pretoria, she is always the calm one and telling me do this and do that) Gerna is now in Potchefstroom and she still provided me with advice. Thanks Sis, I love you.

When I got to dr Ledwaba she was not happy to see me, she said she meant that I must get the tests and phone her for results. She phoned ward 4.6 and spoke to Sr Nthlatleng asking her to keep in touch with the patients from 1 Mil Hosp even if it is only to tell them that everything is still ok and not to leave them hanging. Apparantly it happen a lot with the military patients.

And what happened on Friday 20 Nov 09 (would have been mom's birthday) a sister from ward 4.6 phoned and tell me to be admitted again on Monday for the outstanding tests and for Prof Potgieter to see me and deside what now.

On Monday I was there and all went well. I started with my 3 bottles of 24 hour creatinine clearance. The first one in May 09 was 38, and the first one on Monday went down to 33. But the third one went totally down to 23.6. I caught a fright but the third one was not so bad (says the dr, I don't know the reading) but I am still in Stage 3. I started on Wednesday (still in hosp) with pain on my right side over my kidney area. The pain was bad and the Prof says he think I am bleeding in one of my cysts. Now I must be back on Sonday 29 Nov 09 for scans and sonars next week. I also had to see the social worker and guess what who walk in the same one who gave me the "talk"the last time. And what did she do today after I waited for her for 2 days to see me. She sat down to do the report with me, she asked me a question and while I am explaining to her she fell asleep. She woke up and said she is going now because she is tired she will see me next week when I am back in hosp. And she left. How bizarre is that.

The people in my office I think is not so happy with me because not one of them phoned me the hole week. I think it will be even worst because I will not be at work on Monday. i let them know but I did not get an answer back.

I had a lot of support from my friends in Pretoria this past week. They kept on phoning asking and supporting me. They are Anette Burger, Beverly Roos and Riana van der Westhuizen.

But very special thank you to my best friend Linda du Preez, you are a true friend and I know if I don't hear from you and I get an sms it is because you don't know what to say and I understand.

My darling sister who have her own issues (she was diagnosed with breast cancer 5 weeks ago and must go for mastektomy (breast removal) and chemo)for always being there and talking to me.

My other sister (sister in law) Corne you are also a great support for me and I want to say thank you for being there and that I could know if I call you will be there. I am going to miss you if you go to Mosambique permanently. Then my brother, Barry, the one who do not say much but is always there for me, thank you. You are already in Mosambique but I got sms's from you regularly Thank you.

And then my God who is always there with me, carrying me and showing me the correct way to go. All the Glory to Him.

I am in my own bed tonight and I love it. I will try and keep up to date with what happens.

See u soon.

Friday, April 3, 2009

Start of tests

The weekend of 20 to 23 March 2009 I visit Gerna and her family on the farm near Potchefstroom. No cell reception there. Sunday 22 March 09 I left for Pretoria round about 15:00. On my way all the calls came through on my cell. One of them from Pretoria Academic Hospital telling me that I must report to ward 4.6 (Nephrology ward) on Monday 23 March 09 at 07:00. I paniced, I waited so long for this call and now it is here and what now.
On Monday I booked in for the start of my work-up for dialyses. I saw the dr that morning and they started with all the tests. Stabbing me with needles, measuring urine, eating jukky special diet food, and more measuring of urine. Then I must go for this, then for this then blood for this and that. On Friday 27th I was sent on weekend pass and had to be back at Monday 30th. Prof Potgieter and all his students with my 3 dr all did rounds on Monday with a special guest dr from Miami. There language is to high for me to understand everything but I did catch a phrase or two. What I did understand is that my situation was neglected by the dr's that was suppose to look after me the past 18 years did not do a good job and that is why I am in phase 3 of kidney failure. In my environment with medical health you see the dr you get, there is no permanent dr that you can say this is my nephrologist and he/she knows my situation. I always went to a sickbay and they gave me my medication for my symptoms. If it was not for Gerna who worked at a sickbay and help me on what to do and referred me for this, doing this 24hr urine collection, drawing blood I would not have any history on my disease. But I am here now and need to work from here.
I was discharged on Monday 30th and had to go for a gastroscopy on Thursday 2 Apr 09. Was that something, I had a student learning how to do gastroscopies and she put the camera in and twist and turn and pull back and push in al lot. I am a bit bruised from my lip that was pinched with the camera down to my stomach, when I drink something cold I feel it all the way down. My voice is hoarse but it is over and past. Luckily I do not have a stomach ulcer.
On 15 Apr 09 I must be admitted for further test, this time I will go to theatre. I don't do theatre very good, my lungs usually close up. We will get there when we get there.
For now I am back at work. Today I am going for a week holiday to the farm till after Easter will be back at work on 15th and admission on 16th. I will let you know what then.
I still need to tell you about my living arrangements, but that is another story.

Monday, January 26, 2009

It is a very low period in my life. I've been in bed for the past week because I have a lot of pain and dizzy spells.
I went to the dr on Friday 23 Jan 09, my blood works are not good at all, my kidneys are now non functional and because of that stones form in my kidneys ad that is what cause the pain.
According to my scan I did on Monday 26 Jan 09 my kidneys grew bigger and so did my liver with the lot of kidney stones.
I try to be strong and go on but I keep on crying every time somebody talks to me. I feel so bad to keep saying to the people if they ask "Not to good, I have a lot of pain" I now say to people "I feel good "
I think the biggest stress that I have at the moment is that I know and I can feel that something terrible is wrong but I don't get the phone call to say I must go to the kidney unit at Pta Academic Hosp for my work-up. The dr at the military hosp don't want to take me to theatre and take out the stones they say it must be done at Pta Academic so now I am waiting and feeling like a ship with no direction to go.
I will manage this thing and I will get through this because I have the Lord that is carrying me and that will keep me save. At the moment it is keeping me up and keep me going.

The people at work are so supportive and they do understand what is going on and the fact that I am on sick leave so much. Without there support and encouragement I would not be able to look after my health.

Wednesday, January 21, 2009

Hope everybody had a wonderful Christmas and New Years. Compliments for the new year of 2009, may this year be only good to you.

Christmas and New Year I spend with my sister and her family. I did not take leave over this festive season I worked. At work it was very quiet and not a lot happened.

Petro's daughter did leave for Australia on 28 Dec 08. They are now there permanently. It is quiet without the Christo (5) and Ruben (3) running around in the house. It feels like an old age home.

New Years day I spend with Gerna and her family. I was a wet and rainy day. But is was nice and relaxing. I went to home on Friday so that I will be with Petro and Gerrie. They are all alone during this period with Maretha and her family in Australia (Gerhard (21), their youngest son went with Maretha for a three week holiday in Aus, Tania their second child went to her boyfriend over this period. I could not leave Petro and Gerrie alone that long. I felt so sorry for them.

With my PKD it is not going to well. My creatine is going down alot and I am still waiting for the hosp to phone me for admission. I am so scared I don't know what will happen to me. I feel sort of alone, Gerna and her family was transferred to Potchefstroom and they left just before the schools started, Barry and his family also left for Mozambique and they are now staying there. Petro and her family got there own problems to sort out (they may be loosing there house very soon, and they declared themselves bankrupt) so they have enough to deal with. Maybe I am just feeling sorry for myself but today I don't care what it looks like. I am so tired of being strong so that everybody can sort out their stuff. I am now alone and need to think what must I do. Where are my life going. I don't have a husband or boyfriend to share my issues with so I must sort it out myself. I am now tired of being strong for everybody. I want to cry because I want to, I want to feel sorry for myself because I want to. I don't want to get out of bed in the morning and I don't care what anybody say about that.
And yet I am at work this morning because I promised them I will take minutes for a meeting this afternoon. So somewhere there is still a conscience somewhere there so I am not that far away yet (haha).
I am seeing my dr again on Friday 23 Jan 09 to see my progress. Medically I don't feel to good, something is not working in there but will find out Friday. My mind on the other hand is totally gone. But I will also get through this. There is a Higher Power that is looking after me. I believe He will not let me fall to far, He will help me up again to go on.

Thursday, December 4, 2008

Next step

I have been to the dr again on 3 Dec 2008. I am still waiting for my authority to go to Pretoria Academic Kidney unit for my preparations.
The dr yesterday said that I am first on the list to go, but military members only have one bed at Pretoria Academic in the Kidney unit. At the moment there is another lady who occupy the bed. So I am still waiting.
My creatinine fell to 30, so it is going down very fast.
I am very nervous, I try not to show it to everybody, the people around me have enough to worry about than to listen to my problems so I am trying to cope on my own. I manage but sometimes it is very difficult. If I listen to other peoples' issues then mine seem so small and insignificant.
I am not going on leave in December so it is work for me. It will be not so busy during the festive season so I can work on outstanding tasks that need to be finished.
My brother is leaving for Mosambique on 17 Dec 08 to start his business there, his family will follow later in the year. I hope it goes well. He seem very busy and trying to get everything done before he must leave.
My sister and her family are still waiting for authority to transfer to Potchefstroom, they want to be there before the schools start in the new year. I hope their stuff get finalized now, they are also very on the edge because nothing can get to a point.
I will "see" you soon, must go to work now.

Monday, October 27, 2008

I think I must clear something up. I think that I was maybe misunderstood when I said that it look like my sister is not showing any interest.
Since I started with all this problems my sister has been there for me, she were the one looking after me by telling me where to go to the dr, when to go to the dr. If I had any pains, problems or were just down I ran to her and she were there for me.
When I said that she did not show any interest, she read the piece where I said that she does not show interest and were very unhappy about, what she thought I said she did not show interest.
I love my sister very much and she has always been there for me and for that I will always be grateful.

I am doing well. My mind is just very busy on what will happen? will I get a kidney? when will they start with what. I am still waiting for my authority to come through, so the suspense are keeping me busy. Because of this I don't sleep to well and are up and going very early in the mornings.

I had a wonderful time with my brother and his family for 5 days. It was very nice to be with them and relax. Barry and myself went out for supper on Tuesday night, just the two of us, and we talked a lot about everything, something we could not do with everybody in the house. It felt so good. I love him to bits.

My sister and her family went on a sea holiday that same week when I was in Nelspruit with Barry and his family. They are back now, all with beautiful tans and well rested. I went to visit them on Sunday. It was good, Gerna and myself talked a lot and sorted out stuff. I also love her a lot.

I need to go, work, work, work. It keep me busy. Will keep you posted.